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Old 09-03-2019, 08:27 PM   #41
SoCalGal
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Re: Whack-a-mole next...

My apologies for not responding sooner, it’s very difficult to find the words. I’ve been given an average lifespan of 6 mos. and I’m just trying to deal the best I can. Feel free to friend me on Facebook or follow me on Instagram: fpk_etc
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement and brain MRI shows improvement, resolved areas and nothing new. switch to single agent ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. working on QOL and managing nausea.
3/18/20--->Just did cycle #5
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Old 09-04-2019, 01:18 AM   #42
Pamelamary
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Re: Whack-a-mole next...

Flori,
I am so sorry to hear this news and remember that these prognoses don't necessarily tell the whole of your story. Wishing you peace and strength...... Pam
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 09-04-2019, 05:42 AM   #43
Donna H
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Re: Whack-a-mole next...

You are in no way average! I am sending you strength, love and hugs.
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Old 09-04-2019, 05:54 AM   #44
Laurel
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Re: Whack-a-mole next...

Flori,

I can only imagine how difficult things are for you presently. Lots to wade through and sort out. I think your story may have more chapters than it appears on the surface. You know that old adage: What's the difference between God and a doctor? God KNOWS he isn't a doctor!!!

I am on Facebook, barely, but will try to reach out. Instagram is beyond my techno-abilities! I know, pathetic old lady here!

It is good to hear from you here, though, tough as it for you to share. We laugh and cry together on this board; pray, rejoice and mourn together. Our hells and our heavens are what bind us, not our wins or losses, and certainly not this beast. We are a group of fighters and we fight as a band of warriors. We are Team Druther, Team Her2Support! We are Team Flori and we've got your back! We want to walk with you wherever it leads, if you will let us, because we love you.

Laurel
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

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Old 09-04-2019, 06:12 AM   #45
Lucy
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Re: Whack-a-mole next...

Flori, I am so sorry to hear this. But doctors are wrong all the time. As they say, doctors are only practicing. And also, you know what they call the medical student to finishes last in their class? Doctor! So, there's always hope and hopefully the treatments you've been getting have been kicking the disease in its backside. As I said before, we understand that you have more pressing things going on right now and updating us here isn't your main concern but we do care and we hope you'll let us know what you can when you're up to it. As Laurel said, we've got your back and we're here for you. Hugs
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Old 09-04-2019, 06:25 AM   #46
jra40
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Re: Whack-a-mole next...

I do not believe doctors when they give timelines. You are a strong warrior and I know you can defy the odds! All my love and prayers for you Flori - prove them wrong!

God Bless,

Jessica
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11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 09-05-2019, 09:50 AM   #47
jaykay
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Re: Whack-a-mole next...

Dear Flori,

I'm with Jessica re: doctors and their timelines. Many of us would be speaking from the grave if their timelines were valid.

Thinking of you and sending positive thoughts

xoxo
janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 09-05-2019, 02:47 PM   #48
tricia keegan
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Re: Whack-a-mole next...

Flori Flori morning glory, I agree about Dr's time lines and think we're connected on FB. The world has changed so much since Joe and Christine started this site and I'm sure treatments have too. Keep fighting and know your friends here are with you in spirit.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-06-2019, 10:31 AM   #49
Lani
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Re: Whack-a-mole next...new target for "Lazarus effect"--keep up the hope

HEALTH NEWSSEPTEMBER 6, 2019 / 7:58 AM / UPDATED 4 HOURS AGO
Inside drugmakers' strategy to boost cancer medicines with 'Lazarus effect'
Julie Steenhuysen, Ludwig Burger
8 MIN READ
(Reuters) - In the halls of MD Anderson Cancer Center, the drug Vitrakvi is known for having a “Lazarus effect” in some patients because it can reverse late-stage cancer that has defied all other treatment options.


Developed by Eli Lilly and Co’s (LLY.N) Loxo Oncology and marketed by German drugmaker Bayer (BAYGn.DE), it fights a rare genetic mutation that appears in less than 1% of solid tumors, regardless of where they appear in the body.

Finding those patients will require widespread adoption of sophisticated tests that look for multiple genetic alterations that could be driving the cancer.

So far, progress has been slow.

Adoption of so-called next-generation sequencing (NGS) tests has been stalled by lack of reimbursement from insurers over concerns that the evidence is not there yet to support widescale use, according to more than a dozen interviews with oncologists and pharmaceutical and diagnostic industry executives.

As a result, pharma companies from small biotech Blueprint Medicines Corp (BPMC.O) to larger rivals Lilly and Roche Holding AG (ROG.S) are taking matters into their own hands, bulking up staff to increase patient and physician awareness about testing and building up a gene testing infrastructure that for many community hospitals still does not exist.

Bayer executives told Reuters it plans to spend $70 million to increase patient and physician awareness of testing for rare mutations and to encourage regulatory approval of more tests. They expect that budget to expand as Vitrakvi continues to win approval in other countries.

Lilly told Reuters the company has signed an agreement with Thermo Fisher Scientific (TMO.N) to develop a companion diagnostic test for its experimental drug, LOXO-292.




The deal adds RET mutations - the target of both Lilly’s and Blueprint’s drugs - to Thermo’s Oncomine Dx Target Test, which local pathology labs can use to identify multiple genes linked with non-small cell lung cancer.

The agreement is aimed to help identify more lung and thyroid cancer patients who may benefit from the Lilly or Blueprint therapies. The Thermo test is already approved by the U.S. Food and Drug Administration - a key standard for Medicare coverage, the companies said.

According to Dr. Brian Alexander, chief medical officer of Roche’s gene testing company Foundation Medicine, only about 15% of U.S. patients with advanced cancers get comprehensive genomic profiling. Another 25% get single-gene testing, he said, and a large proportion “are not getting any testing at all.”

At MD Anderson, which sees 100,000 new cancer patients a year, only around 10,000 eventually have their tumors sequenced.

For a rare few, the tests are lifesaving.

Xin Zheng, 47, a mother of three in Michigan who was referred to Reuters by Blueprint, was diagnosed with stage 4 lung cancer in 2016. After failing several treatments, she was out of options.

Her husband, Zhigang Wei, asked for genetic sequencing, and the test turned up a RET mutation. After contacting multiple lung cancer experts, Zhigang found an early-stage clinical trial treating patients with Blueprint’s experimental drug, BLU-677.

Now, Xin is nearly back to normal.





“My wife is lucky,” he said, adding her quality of life is much better and she has hope for the future.

Finding patients with such rare mutations is like “looking for the needle in the haystack,” said Stefan Oelrich, head of pharmaceuticals at Bayer.

Dr. David Hyman of Memorial Sloan Kettering Cancer Center, who tested Vitrakvi in clinical trials, said making these tests the norm for advanced cancer patients will require a huge shift in the way oncology is practiced.

“It’s painful to know there are patients out there with these alterations who are dying without knowing about it and without getting any treatments,” he said.

NOT GETTING TESTED

For Bayer’s Vitrakvi and Roche’s Rozlytrek, along with similar drugs in development, genomic testing is critical to finding patients who can benefit from them.

Cancer patients and drug companies alike got a boost last year when the federal Medicare health program for the elderly and disabled said it would cover FDA-approved tests for advanced cancer patients that can identify hundreds of genetic mutations at once. A Medicare endorsement is generally followed by widespread coverage decisions by private insurers.

But the final regulations dropped a requirement that testmakers prove the tests are cost-effective and improve patient care. That created an “evidence gap” that has allowed some insurers, also known as third-party payers, to withhold coverage or demand more proof that they benefit patients, said Jeff Schreier of Diaceutics PLC (DXRX.L), a data analytics company that works with drugmakers to improve diagnostic testing.

“More payers are coming around, but it’s slow,” he said.

FILE PHOTO: Xin Zheng and Zhigang Wei are pictured on a family trip to Crater Lake, Oregon, U.S. in this July 2018 handout photo obtained by Reuters August 30, 2019. Zhigang Wei/Handout via REUTERS
The most recent coverage policy from CVS Health Corp’s (CVS.N) Aetna approves many single-gene tests for specific cancers, but still largely considers multi-gene tests experimental. Anthem Inc’s (ANTM.N) policy limits testing to “medically necessary” use and states there’s “insufficient published evidence” to support widespread testing.

And while Foundation Medicine’s and Thermo Fisher’s tests are getting reimbursed from Medicare, many hospitals such as MD Anderson, which have developed their own tests, are not guaranteed payment. “Reimbursement is still a driving force,” MD Anderson’s Kenna Shaw said of genomic testing, which costs an average of $5,000 per patient globally.

Lilly bought Loxo in January for $8 billion to profit from its targeted drugs in early-stage development. Bayer secured the rights to Loxo’s two leading compounds in a 2017 alliance.

Dr. Anthony Sireci, Loxo’s senior medical director, said the company has been working to “democratize” testing in the United States by increasing its use in local pathology labs, where most cancer testing has traditionally been done. The Thermo Fisher agreement will support those goals and expand patients’ access to “high-quality genomic testing,” he said.

“TEST YOUR CANCER”

Bayer has hired diagnostic experts to help its medical and sales staff assess the barriers to genomic testing and ensure that local pathology labs are including the genetic alterations targeted by its drugs when they profile tumors, the company’s oncology strategic business chief Robert LaCaze said in an interview.

Bayer also launched a public awareness campaign called “Test Your Cancer” that urges patients to ask their doctors about genomic cancer testing. The company is working with testing providers to ensure test reports are easy to understand.

Blueprint, which has six genomically-targeted drugs in development, told Reuters it plans to hire six diagnostics experts to increase awareness of the mutations their drugs target, especially in community medical practices, where 70% of cancers are treated.

Bayer sees signs of progress. Based on internal data, the company estimates average sequencing rates across tumors neared 30% last year, and the company saw a two-fold increase in the number of labs offering tests that carry the mutation targeted by Vitrakvi.

Bayer has not released sales figures for Vitrakvi.

Asked for an update in the most recent earnings call in July, Bayer’s Oelrich said uptake is going “according to plan,” but declined to say how many patients are using the drug. LaCaze said with very rare cancers like the ones Vitrakvi targets, sales growth is “something that will build over time.”

Editing by Michele Gershberg and Edward Tobin
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Old 09-06-2019, 02:27 PM   #50
Laurel
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Re: Whack-a-mole next...

What a post, Lani! Thank you!
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

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Old 09-06-2019, 07:08 PM   #51
caya
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Re: Whack-a-mole next...

Sending positive thoughts your ways, dear Flori.
You are one brave warrior woman!


all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
13 Years NED!!
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Old 09-06-2019, 07:56 PM   #52
Margaret Eleanor
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Re: Whack-a-mole next...

Flori,
I usually just just follow quietly and admire you from afar. However, tonight I’ll step up and shout out...I think you are one of the strongest, most wise, and compassionate women I’ve ever come across, in person or electronically. I love you and I’m proud to be on your team.
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Old 09-07-2019, 08:14 AM   #53
SoCalGal
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Re: Whack-a-mole next...

Good news on brain/cervical MRI—NOTHING NEW in head and spinal cord met has shrunk way down. Brain met also shrinking — no swelling in cerebellum and nothing to correlate or cause vertigo so with that news me and my dear friends all started to cry. Brain surgeon didn’t yet have report but he came bursting into the room saying “your scans look good” and showed us pics on his iPad. (Of course he did).

I feel like I’m breathing for the first time since this all began. Thinking that I have another three months of life until repeat scans. And remembering 12 years ago when I lived in 3 month bursts.

Thank you for all the support.
Much love and one love.
Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement and brain MRI shows improvement, resolved areas and nothing new. switch to single agent ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. working on QOL and managing nausea.
3/18/20--->Just did cycle #5
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Old 09-07-2019, 12:00 PM   #54
DianaMK
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Join Date: Mar 2011
Posts: 70
Re: Whack-a-mole next...

Great news! God is good.
__________________
12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 09-07-2019, 12:00 PM   #55
Lucy
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Posts: 290
Re: Whack-a-mole next...

I'm glad the news was better than expected. Thanks so much for updating us with the information. Keeping you in my thoughts and prayers. Hugs
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Old 09-07-2019, 12:07 PM   #56
caya
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Join Date: Jan 2007
Location: Thornhill, Ontario Canada
Posts: 2,311
Re: Whack-a-mole next...

Great news Flori, B.H.



all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
13 Years NED!!
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Old 09-07-2019, 12:39 PM   #57
Laurel
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Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 1,983
Re: Whack-a-mole next...

Yea!!!! Whew! Hard to type through the tears of joy! Man, am I elated! Got your six, Flori-girl! Go live, breathe and dance!!!
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

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Old 09-08-2019, 08:24 AM   #58
Donna H
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Join Date: May 2014
Posts: 253
Re: Whack-a-mole next...

So great to hear!! Dance, dance, dance!
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Old 09-08-2019, 04:37 PM   #59
Shobha
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Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
Re: Whack-a-mole next...

Best news I have heard today!!! Sending you prayers and best wishes
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 09-08-2019, 05:27 PM   #60
jacqueline1102
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Join Date: Apr 2012
Posts: 176
Re: Whack-a-mole next...

Hi Flori,

This is wonderful news. So happy for you and your loved ones.

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
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